Monday, October 27, 2008

Last night I watched Mr. Magorium's Wonder Emporium for the hundred and seventieth time. It's hokey, and goofy and dopey and magical. There is a beautiful scene dealing with death, and I think it's such a gentle way to introduce death to children. Mr. Magorium has a great monologue which I will share.

When King Lear dies in Act V, do you know what Shakespeare has written? He's written, "He dies." That's all. Nothing more. No fanfare, no metaphor, no brilliant final words. The culmination of the most influential work of dramatic literature is "He dies." It takes Shakespeare, a genius, to up come with "He dies." and yet every time I read those two words I find myself overwhelmed with dysphoria. And I know it's only natural to be sad, but not because of the words "He dies" but because of the life we saw prior to the words.

In my own life, I am doing fine. I feel as if today might be a turn around day for me. Thinking of ya'll. Thanks for reading.

Thursday, October 23, 2008

Sudden change of events here. Will start the transplant listing process near the end of this admission. Have been awake all night coughing up blood and wondering if I'll be well enough to wear my brilliant costume on Halloweenie. I also made plans with BFF BEN to carve pumpkins with his nephew but that may go down in the shitter too. Been unhappily blazed on morphine and a variety of other narcotics over the last couple of days. Breath has been an unusual struggle. I'm attending a short AA/NA meeting tomorrow night if I can handle leaving the hospital for a short while. I will, of course, have oxygen and my IV pole in tow. I'm trying to convince my mom to sneak the dog in to visit (the OG/OD [original gangsta/original dog] Crusher) and that in itself will likely make the huge hole in my lungs that's causing a massive bleed close up all on it's own.

My latest financial struggle has been regarding trying to get a replacement Vest machine for the one I have had for the last fourteen years. I got one of the first models and while it still turns on and shakes, it's lost any control over tightness and the frequency definitely lacks. Hill Rom acts so wonderful when you first talk to them-- they'll do their best to make the process easy and as the woman on the phone told me, 'rest easy!'. I had to sign a letter saying I was willing to accept any financial responsibility and copay left over by my insurance company. This worries me-- I am already in debt from a combination of medical bills and inconsiderate spending and my income is a joke. Yes, I work once a week but I am getting paid $2 less than mim. wage an hour and these shifts are generally less than eight hours each. I have social security income which is necessary to ensure I have health care, but my SSI is much smaller than even a humble income that would allow me to live away from my mother's house, let alone pay any other bills on my own. I am paying my bills fine now, but my mom is having to slip by without charging me rent and it is often that I need her help buying the copious amount of groceries I go through. Anyhow, the point of this is that it turns out my health insurance very rarely accepts a request to replace a Vest machine. They will buy the first one but it is very infrequent that they will cover the cost of a replacement. The year I got my first Vest it was still very new to the market and because of it's outrageous cost, a lot of mutants had trouble getting them. At around $17,000 my insurance denied my claim, as well as about 20 other individual cystics in my area. Luckily, we were bound by some sort of lawyer magic and filed a joint lawsuit against the State of Colorado. It was basically, pay for this shit or you kill us. They paid, somewhat quickly and quietly without a fight and I never saw a day in court. But I don't know how I'm going to go through that again, and on my own for God's sake if that need be. I spoke to a really nice woman in the financial department that assured me with such a sweet voice saying, "Oh, honey, don't worry, if your copay exceeds $5,000 a month we have a great program to help lift a small bit of that financial strain."

I really don't think I've laughed so hard in weeks. I gasped for air after that fit, which turned ino a coughing fit and then into a few moments of trying to catch my breath and I said, "that's really wonderful seeing as my income is less than $7,000 a year."

So what if it will help me live? So the fuck what. They (the state, the pharmacon, the anyones, whobodies, fuckers and whoeverelses) don't seem to care so I suppose why should I? Hah.

Despite these set backs, I'm (and get ready for an AlAnon term) still moving my feet. My body feels so disconnected as do my thoughts. I am scared of the possible addiction I have to face if I am discharged with pain medications but I will face that when I get there. My heart is warm, I am feeling hopeful and before I sprout more flowers from my ears and retard my readers with more rainbows out of my asshole I'm going to close this.

I hope you are all well. I certainly am not. But there is always hope for recovery. We've all gone down this road many many times. And if there is one sure thing about this nasty fuckpiece of a disease, it's that more often than not it's going to turn out exactly like you hadn't anticipated it to.

Tuesday, October 21, 2008

I just saw a blurb on the morning news about a website where you can send out e-cards (yes, like those irritating dancing/singing frogs and shit that you send out as a last minute "oops, I forgot today is your birthday/anniversary/jerk off day! Here's a last minute card!" to notify your past sexual partners that you have recently been diagnosed with a sexually transmitted disease. Having recently had a treatable by 'cillin STD in the last year I will say it's horrible to have to face your partner to tell them (especially when you know it is their fault). How funny though, to send a card to their inbox so nonchalantly like, hey! here's a picture of a really hunky guy's muscular back, have a great day! Oh, and by the way, I have the gunk down there, you might want to get checked. Imagine the weird build up and let down of getting that in your inbox. The series of realization, anger, panic, etcetera.

inSPOT.com "Tell Them" - Interestingly all the cards I can find are really homo-centric. I am especially amused that they are so gay. I'm surprised they don't have different cards for different diseases. Hey! I've got crabs! Shave that shit and call a doctor 'cuz you probably got it too, sucka!

Sunday, October 19, 2008

I have been putting together my living will and a list of phone numbers and emails for my mom to contact when I pass away. Have no fear, I'm not that urgent. In fact I am better than I was earlier this year, and between you and me, I thought I was a goner then. There are little things we mutants tell ourselves that represent worsening health. For example, needing a port or needing O2 twenty four hours a day. For me it's always been having visible changes on my x-rays. Earlier this year it was grotesquely massive lumps of pneumonia all over my left side, causing severe pain and shortness of breath. It was scary, I was needing more oxygen during the day then ever and just a few short steps were sending me into a breathless panic.

Here I am now, feeling awful yet better than I was from March on. My x-rays are still changing, negatively, I've still got the nose hose and I'm still in lots of pain. The morphine before treatments of routine vicodin seem to be helping physically but I'm worried about the power struggle I will have if I need to go home with oral pain medications. Part of my addiction issues absolutely include pain medications and sleeping pills. I can run through a months supply in a few short days. I have no self control. A big part of my sobriety is trying to control those urges as well. It isn't realistic to think I'll leave here able to vest or have coughing fits without the need of such medications. I'm going to face it when it happens. I'm scared, yet feel hopeful that I will do the right thing for my body by not abusing them.

Rhi and Kevin left a beautiful comment on my last blog. They visited me a while back and Rhi hit a very scary roadblock of sickness. She found herself hundreds of miles from home sicker than she'd ever been before. And yes, for once, I was not the sickest girl in the room. And it was strange-- advocating for someone else, carry someone else's O2, holding the arm of someone with the familiar struggle for breath. It was a beautiful lesson for me, somewhat humbling. And Rhi made it through like a champion like many of us do over and over again. She was graceful and kind, polite to the healthcare workers at my hospital that I wanted to strangle for their ignorance or attitude. She talked about how my hospital was so much nicer than hers and it brought me to an understanding that where I am now is not a bad place. It's familiar and full of loving staff members who know me.

Upon admission I entered my hospital room to a freshly made bed with a small bowl of cinnamon bears on it. My nurses, or should I say my friends, remembered them to be my favorite candy. They left a small clusterfuck of these tiny little bears for me to ingest as a warm get well gesture.

I feel thankful for what I have. My lungs and heart and kidneys and pancreas and all those little fuckers of organs in my body are doing an incredible job despite everything. They haven't given me much but they've given me everything they can and for that I am truly thankful.

Saturday, October 11, 2008

It's funny how so easily I can trade one vice for another. I am in bed under a warm down comforter nursing a bottle of cough syrup. Funny for a few reasons. For one, and as the far most important point, I don't particularly enjoy cough syrup or the hazy fog is gives me but I've been fighting a terrible cold for two weeks that has now dropped into my lungs. For second, and also important to note, at this time I would generally be nursing a hot toddy or more likely a straight glass of whiskey on my more usual sick nights. Perhaps sobriety has done some good. My body is definitely thanking me, my kidneys have not failed and I'm having less pains in my stomach. My memory has been shit in these twenty-some-odd days but it's been worth it. I carry around a small pad of Hello Kitty paper that I've kept notes, some elaborate, some of no more importance than what I would like for lunch that day. Nonetheless it's been a great help. And everyone I've spoken to with any amount of sobriety under their belts have said the first couple of months are particularly difficult.

Which brings me to a very crucial thing I must state, and please believe this is not a statement made in vain or self denial, this is a discovery I made about twelve minutes into my first AA meeting: I AM NOT AN ALCOHOLIC. I'm simply not, I can go many stretches without drinking, I can have one drink, I don't have any situation of significance involving drunken lunacy in public (privately is a different matter). No one in my life believes I need AA, which is making the commitment that much more of a challenge. My mother continues to get completely shit-faced in my presence not truly understanding the struggle I am dealing with. I just simply felt the drinking was out of control, I felt the wake-up-take-a-swig-of-whiskey-to-numb-the-aching-throat-from-cough was a bit unmanageable. It just all felt wrong and I can't pinpoint an exact second I realized I had a problem but I will be the first to admit my addiction issues are far less severe than 9 out of 10 people in Alcoholics Anonymous.

Sobriety is in some senses quite refreshing. I handled beers all day at work one weekend and didn't drink. I wanted to, but I held off despite the crack of the cans opening all around me. I watched bands play that night, amazing musicians filled with rock'n'roll fury barely witnessed once a year, and I was free of toxins. Seeing a band I love play with no booze, no weed, no hallucinogens or any of that in my system was incredible. I couldn't believe the jolt I got from the music alone.

And so be it. I would like to think one day I can switch to a social drinker in full control living life gracefully and undertaking a night of drinking with caution and care but more than that I hope that I will always remember what it's like to feel this way. What it's like to know that I'm not destroying my body from the inside out.